Learning About Hospice Should Begin Long Before You Are Sick

As a consultant who counsels families on end-of-life care management, Johanna Turner often shares the story of her mother’s final days 21 years ago. Thanks to the skilled and loving care provided by a local hospice, Turner was able to keep her promise to let her mother die in their Oakton, Va., home.

“She had the best of care for five months,” says Turner, a District resident. “A hospice licensed practical nurse came first thing in the morning to help change complex dressings, a primary nurse visited several times a week, there was an on-call nurse to help address pain-control questions in the middle of the night, plus a social worker and a chaplain. It took all of us to get through those weeks.”

Still, Turner tells families, she had to bear much of the caregiving, even taking a leave of absence from her job. “I treasured that time, but it was physically and emotionally exhausting. Hospice made it doable, but the truth is, it was still a lot of hard work.”

Some families, she says, may not be able to bear that burden, certainly not without hiring extra help. But, she says, “the hospice gave me the skills and confidence to do what I wanted so badly to do for my mother. I will always be grateful.”

Introduced to the United States in the 1970s, hospice care is becoming an increasingly common treatment. Last year, 1.65 million people received hospice care, up from just more than 1 million in 2004, according to the National Hospice and Palliative Care Organization. In addition, there were more than 5,500 programs in the U.S. last year, compared to 3,100 in 2000.

Although the growth in hospice programs has given patients and their families more choices than ever, a recent Washington Post investigation into the industry found widespread concerns about the quality of care. The Post cited numerous complaints, noting that although hospices are supposed to provide continuous nursing care to patients whose pain or symptoms are out of control — commonly called “crisis care” — one in seven do not.

Unfortunately, there is no federal rating system — as there is for hospitals and nursing homes — that can help consumers make educated choices about the hospice they select.

For many families, hospice is an unfamiliar concept that prompts fear and questions, including where, why and even when someone should receive hospice care. To help patients and their caregivers, here are some hospice basics:

What Is Hospice Care?

Hospice is not a particular place, like a hospital, but a service that provides end-of-life care and support to the dying and their families, most often in a patient’s home. By signing up for hospice, patients generally agree to stop all disease-fighting treatments, such as chemotherapy and radiation, although some hospices allow such therapy if it is to help manage symptoms, such as pain or problems breathing.

One of the hospice’s primary goals is to alleviate pain. Through a team of caregivers — doctors, nurses, social workers, grief counselors, spiritual counselors, home health aides and volunteers — the hospice provides comprehensive care, including drugs, medical supplies and equipment. It instructs families on patient care and even provides special services such as physical therapy and psychological counseling.

“If we can manage and alleviate pain, we can help reinvigorate patients to help them accomplish whatever it is they want to do in their remaining days, whether it’s making peace with an estranged sibling, attending the wedding of their grandchild — or just going out to eat or fish,” says Malene Davis, president of Capital Caring, one of the first hospices in the Washington area. It now cares for about 1,200 patients a day.

How Much Care Does Hospice Provide?

Comprehensive care generally does not mean around-the-clock service, although many hospices provide 24/7 care when the patient is in crisis or near death.

“The hospice will teach families how to care for a patient, address their concerns and answer questions, but it does not take over the caregiving,” says Dale Lupu, an associate professor at George Washington University’s Center for Aging, Health & Humanities. “Someone on the hospice staff should be available by phone 24/7 in case there’s a crisis. But for hour-by-hour, day-to-day care, the family has to figure out a way to be involved,” even if it means hiring a private nurse or home health aide.

That’s one reason why hospice care may not be for everyone. “Families have to look within themselves and ask if they are comfortable being part of the dying process,” says Linda Kunkel, director of marketing and business development for Care Options, a Northern Virginia care-management firm. “It can be very gut-wrenching and, for some people, very hard.”

Who Pays For Hospice Care?

Medicare covers most hospices for its beneficiaries. Private insurance plans and HMOs also generally pay for hospice care, but they may have a preferred provider. Check with your insurer before you begin your hospice search.

In some cases, a small co-pay — such as $5 or 5 percent — may be required for medication, inpatient facility care and/or respite care.

Additionally, most hospices offer financial help for families in need. So make sure to discuss any financial concerns in your initial meetings.

If Hospice Is Not A Place, Where Do I Get Hospice Care?

Nearly two-thirds of hospice patients die at their homes, a nursing home or an assisted-living facility.

For patients who can’t be cared for at home — perhaps they live alone or have complications that can be treated only at a health-care facility — some hospices have inpatient facilities in freestanding centers or specially designated sections in hospitals or nursing homes.

“The traditional medical approach is cure, cure, cure; but when a person is dying, he or she may need a different approach,” says Linda Adler, head of Pathfinders Medical, a California health-care advocacy firm that helps patients with complicated medical diagnoses. “The patient needs someone who’s willing to move the conversation from finding a cure to having best quality of life in the midst of an illness, someone who’s not afraid to talk about the end of life and provide compassion in the final days. Most physicians aren’t trained to do that.”

Hospice caregivers also have in-depth training and experience in palliative treatments for pain management. “Most doctors are not adequately trained in pain management, and the quality of pain control in hospitals and nursing homes is very uneven,” says Naomi Naierman, who was the president of the American Hospice Foundation before it closed last year.

When Should I Start To Think About Hospice?

Most hospices require an order from the patient’s physician as well as approval from the hospice medical director. Both must certify that the patient has six months or less to live if the illness runs its normal course. However, if a patient outlives that time, he or she can be “recertified” to continue receiving hospice care.

But experts in end-of-life care say most Americans need to start thinking about hospice long before the final six months is near. As the American Cancer Society notes on its website: “One of the problems with hospice is that it’s often not started soon enough. Sometimes, the doctor, patient, or family member will resist hospice because he or she thinks it means you’re ‘giving up,’ or that there’s no hope. This is not true. If you get better or the cancer goes into remission, you can leave hospice and go into active cancer treatment.”

Indeed, hospice experts say many people leave hospice, a situation that the late humorist Art Buchwald made famous when recounting his own discharge from a hospice. Patients can then be readmitted to hospice when their conditions deteriorate again.

J. Donald Schumacher, president of the National Hospice and Palliative Care Organization, says patients should discuss hospice options as early as they are diagnosed with a potentially fatal disease. “Don’t wait for the doctor to begin the conversation. Even if you agree to aggressive therapy, ask what are the plans if you don’t return to your optimum health.”

Are All Hospices The Same?

No; they vary greatly.

An increasing number of hospice organizations are for-profit, a distinct change from the early days of the hospice movement when they were mostly nonprofit. Today, 65 percent of hospice organizations are operated as for-profit companies, up from 34 percent in 2000.

Being a for-profit company is not inherently bad, but many of the complaints about substandard service have been leveled at for-profit hospice firms, The Post investigation found. The Post reported that the typical for-profit spent less on nursing and was less likely to have sent a nurse in a patient’s last days of life.

Still, Adler of Pathfinders Medical says consumers shouldn’t necessarily refuse to use a for-profit concern. “There are bad hospices, just like there are bad doctors” in both for-profit and nonprofit organizations, she says. “There are also great hospices in both kinds of groups. That’s why people need to do their homework.”

How Do I Find A Good Hospice?

First, seek recommendations from health-care providers and specialists such as geriatric-care managers. Ask which hospice they would use for themselves or a loved one.

Next, call the recommended hospices and ask questions about the issues that matter most to you, such as:

— How often do their caregivers come to visit? (A nurse’s aide should visit about three times a week and a nurse or doctor once a week, Naierman says.)

— Are their doctors and nurses certified in palliative care?

— Is there crisis care? How fast can a caregiver get to your home in case of a crisis? Will they come at any time, even 3 a.m. Saturday?

— Will the patient’s primary doctor still be involved in the medical care?

— Will a nurse or clinician be in the home when the patient is actively dying? (“The answer should be yes,” Naierman says. “If it is anything but yes, run, don’t walk, away.”)

— Is there an inpatient facility if the patient needs extra care? Is it conveniently located?

— Are there limits on radiation and chemotherapy, even if it’s to control pain? What about IVs, dialysis or blood transfusions?

— How does the hospice handle new health problems that are curable, such as urinary tract infections or pneumonia?

— What is expected from family members? What will they be required to do? Give medicine, including shots? Bathe the patient?

— Is respite care – providing relief and time off for caregivers – offered?

“Having a conversation with the hospice admission people helps you get a feel in advance on how receptive they will be to your needs,” says Naierman, who helped develop 16 key questions to ask a hospice.

Are There Any Other Criteria To Judge The Quality Of A Hospice?

Yes. Here are some details to look for:

— Accreditation status. Three organizations — the Joint Commission, the Accreditation Commission for Health Care and the Community Health Accreditation Program — inspect and approve hospice programs.

“I would always lean toward an accredited program when available because it speaks to a program’s willingness to open itself to review and, hopefully, improvement,” says Lupu, who notes that only 40 percent of hospices are accredited.

— Age and patient load. “Experience — gained over time and gained over a number of cases — usually helps build both individual clinician expertise and organizational/team expertise,” Lupu wrote in a recent post on Pallimed, a blog about hospice and palliative medicine. “Very new and very small hospices are unlikely to have the breadth of experience and the depth of resources to assist with challenging or unusual circumstances.” She suggested that patients should generally lean toward an organization with at least five to 10 years of experience that handles at least 80 patients a day.

— “Live discharge rates,” which is the proportion of people who leave hospice care before dying. A large number of departures may signal that patients were unhappy with care and services. “I’d select a hospice with a live discharge rates in the 10 to 20 percent range,” Lupu says.

Republish This Story

Learning About Hospice Should Begin Long Before You Are Sick

For those who need to know the legal underpinnings of using our content, we make it available under the Creative Commons CC BY 4.0 license. Here’s what we ask:

You must credit us as the original publisher, with a hyperlink to our site: Kaiser Health News. If possible, please include the original author(s) and “Kaiser Health News” in the byline. If you’d like to explain more about who we are, please use: “a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.” You may use our logo when linking to or posting materials on your site: Download high-resolution .PNG file

Please preserve the hyperlinks in the story.

It’s important to note, not everything on khn.org is our original content or available for republishing. If a story is labeled “All Rights Reserved,” KHN cannot grant permission to republish that item.